A meaningful community is key to ending tuberculosis

The health system forgets that tuberculosis is not just a medical condition. It exists and is fought within social contexts, families and communities. Photos used for expression purposes only

It was World TB Day on March 24th, and despite its bold claims, tuberculosis (TB) remains one of the most pressing global health challenges disproportionately affecting marginalized communities. Despite being preventable and treatable, tuberculosis continues to hit humanity hard. According to the World Health Organization's Global Tuberculosis Report 2024, an estimated 10.8 million people developed active TB in 2023, resulting in around 1.25 million deaths worldwide. Medical advances in tuberculosis treatment and diagnosis play an important role, but they cannot eliminate tuberculosis alone. What is needed is the power of community involvement to prevent tuberculosis, timely diagnosis, adherence to treatment, and public awareness. The health system forgets that tuberculosis is not just a medical condition. It exists and is fought within social contexts, families and communities. This makes active community participation a fundamental part of an effective tuberculosis reaction.

So, what does community engagement for TB care mean? These include those affected by TB, those most affected, including survivors, families, communities, and grassroots organizations. Their participation is crucial at multiple levels in the creation of co-designed care models, shaping awareness campaigns, and treatment support programs that address both social and economic barriers to TB care.

Integrating the living experiences of people affected by tuberculosis into medical responses allows communities to accurately define the gaps, challenges, what support systems they need to be affected, and the best support systems to design services to ensure equitable access to care. The role of the community is not only to contribute ideas, but also to actively participate in tuberculosis care itself. For example, survivors can play an important role in making healthcare workers and volunteers sensitive, understand the living reality of those affected, and ensure dignified, unstigmatized services.

Community involvement is key to reducing stigma

Beyond improving access to care, community involvement plays an important role in reducing tuberculosis-related stigma. Stigma remains one of the biggest barriers For early diagnosis and treatment, fear of discrimination often discriminates affected individuals from seeking medical help or talking about their experiences. Survivor-led advocacy and family and community-led narratives can change public perceptions of TB, normalize discussions about TB, and encourage people to take action early.

Despite the clear benefits, meaningful community involvement in tuberculosis policy remains absent. Individuals affected by tuberculosis will be excluded from persistent stigma advocacy, policy-making and communication efforts. Furthermore, TB programs across the country often have difficulty integrating community members into medicalized, professionally-led frameworks, limiting opportunities for grassroots engagement.

In many cases, community participation is reduced to tokenism. In tokenism, engagement is only required for verification rather than equal partnerships. And without adequate funding and institutional support, grassroots organizations struggle to create impacts and bring about long-term change. Many national TB programs still operate within a strict top-down structure. There, policies are created without meaningful input from the community aiming to serve. This reduces the overall effectiveness of the TB programme and perpetuates a barrier to care.

Where the model worked

There are prominent examples of community-led initiatives successfully demonstrated the power of community engagement. In India, survivors of TB (SATB) India's first survivor-led advocacy movement have effectively raised and advocated patient rights, policy changes, nutrition and mental health support and public awareness. In South Africa, the Desmond Tutu TB Centre combines research, community participation and policy advocacy. “Kick TB” Campaigneducate school children about TB using soccer. These initiatives demonstrate that communities can promote sustainable change when they are given a leadership role in TB response.

Community involvement should be rethinked as a co-creation process, not as a peripheral activity. It is time for the affected communities to be at the forefront of policy decisions and ensure that their living experiences shape interventions at every stage. Training and capacity building must be a two-way process. In a two-way process, we learn from community members as much as national TB programs provide technical education. Furthermore, financial investment is essential not only for health services, but also for community-led advocacy, education, and structural reforms that allow local organizations to acquire ownership of TB programs.

The fight against tuberculosis requires a change in mindset that places people affected first before numbers. This is a difficult transition. Medical interventions alone do not eliminate tuberculosis. By placing people affected at the heart of tuberculosis policy, care delivery, and research, we can move away from tokenism and effectively redefine the paradigm of tuberculosis care, making it empathetic, fair and person-centered. Only by fostering true partnerships, shared decision-making and sustainable investment can we create a future in which tuberculosis is no longer a global public health threat.

(Chapal Mehra is a public health expert, a convener of survivors for TB (SATB), and a group of survivors, advocates and experts working on TB and related comorbidities. Vashita Madan is the communication lead with SATB. chapal.mehra@gmail.com)